@Article{chd.12581,
AUTHOR = {Paul C. Helm, Sebastian Kempert, Marc-André Körten, Wiebke Lesch, Katharina Specht, Ulrike M. M. Bauer},
TITLE = {Congenital heart disease patients’ and parents’ perception of disease-specific knowledge: Health and impairments in everyday life},
JOURNAL = {Structural and Congenital Heart Disease},
VOLUME = {13},
YEAR = {2018},
NUMBER = {3},
PAGES = {377--383},
URL = {http://www.techscience.com/schd/v13n3/38990},
ISSN = {3071-1738},
ABSTRACT = {<b>Background:</b> Children and adolescents with congenital heart disease (CHD) and their families
require qualified combined medical and psychosocial information, care, and counseling. This study
aimed to analyze CHD patients’ and parents’ perception of disease-specific knowledge, state of
health, and impairments experienced in everyday life, as well as factors influencing these
perceptions.<br/>
<b>Materials and Methods:</b> Analyses were based on a survey among patients/parents recruited via
the German National Register for Congenital Heart Defects (NRCHD). The total sample (N = 818)
was divided into four groups: “Children” (176 patients), “Adolescents” (142 patients), “Adults” (269
patients), and “Parents” (231 parents). The patients were stratified into those with simple and those
with complex CHD. Descriptive and univariate analyses were performed.<br/>
<b>Results:</b> Patients’ age and CHD severity were related to self-assessed state of health (P = .04 and
P = .02). In addition, CHD severity was associated with worse impairment in everyday life
(P < .001). Psychosocial support was related to the self-assessed state of health (P = .01) and the
reported impairment in everyday life (P < .001).<br/>
<b>Conclusions:</b> Patients’ age, CHD severity, and psychosocial support seem to be related to selfassessed state of health and impairments in everyday life. To evaluate causality beyond associations, the development of patients’ and parents’ assessments and quality of life during the
phase of transition from childhood to adulthood could be investigated by prospective longterm studies.},
DOI = {10.1111/chd.12581}
}